I never thought it would be me

It simply never occurred to me that any of my children would have learning difficulties, let alone a learning difficulty like Down’s Syndrome. My pregnancy was boringly normal, and every time I consulted the baby book I turned over the pages dealing with medical problems in the baby. I was far more worried about the birth itself to bother about what it was going to be like when the baby actually arrived and I didn’t think much further than that. Why bother worrying about something that was never going to happen to me? My children were going to be geniuses, the lot of them.

Looking back on it, the possibility that my son Sam had Down’s was suspected pretty early on in his little life. The moment he was born he was very floppy, but as I was so weak after giving birth that I could barely hold him, I wasn’t really aware of the concern going on around me. By the end of the day, however, I had got the idea that something was wrong.

I will never forget the look on my husband’s face when we were told that it was most likely our baby had a “chromosomal abnormality”, Down’s Syndrome. I had thought that the consultant was coming to talk to us about the problems Sam and I had in establishing breastfeeding, but we were given much more frightening news instead. He looked as if he had been kicked by a shire horse. I didn’t feel much differently myself and could barely take in what the consultant was saying.

Over the next three days I embarked on an emotional roller coaster. At first I was shell shocked that such a thing should have happened to me and my baby, next I was amazed that the most pretty newborn I had ever seen (even though he seemed unconnected with me, and it felt like he belonged to the hospital) could possibly have anything wrong with him. I veered between fierce hope that the medics were mistaken, that the blood test he’d had on his second day of life would prove them wrong, that the fact that he was now breast feeding successfully, that he’d had a normal EKG result would mean that this wasn’t happening to us, and the feeling that I simply didn’t want to have to deal with anything this big, with a responsibility that overwhelmed me.

Eventually, after the blood test results didn’t come back on the day they were supposed to I could stand it no longer. The suspense of not knowing was paralysing me. I endured family visits and the constant trail of people telling me that there could be something else wrong with my baby. With having to hear that my baby wasn’t “normal”. With having my joy stolen. I gave up.

I thought to myself – I don’t care what they say about my baby. I don’t care what his chromosomes are. He’s my baby, and I love him. I’m not having people I don’t know, who don’t know me, who don’t know my baby telling me that he’s anything less than just right. I’m going to steal my joy right back and feel pleased with myself for having been so brave and doing it; having a baby. Just like every other mum.

After that I felt better.

When the test results came back positive I was still sad; I still cried. I still mourned the fact that my baby was different to everyone else’s, but having the knowledge was better than not knowing. The suspense of waiting for results was far worse than the news when it eventually came.

Finally we had to take Sam down to the Bristol Hospital for Sick Children for a detailed echo scan on his heart. This is because there is a 1 in 2 chance that a baby with Down’s Syndrome will also have a heart defect, from severely life threatening to barely noticeable. We could have waited to have the echo where I’d given birth, but this would have been a wait of three weeks and after the suspense of waiting for the test results in the first place I couldn’t stand any more delays. I wanted to get it over and get on with our lives.

I had been in there myself as a child, but I wasn’t prepared for the overwhelming sense of dread I felt as I entered the front door, or for the rush of memories I’d not thought of in years. How could I stand it if my baby had to go through what I did, possibly even worse? The thought that my little one might have to spend his babyhood in and out of hospital, being poked and prodded by doctors appalled me.

I vividly remember sitting in that warm, darkened room, listening to the Bob the Builder video that was going on in the background, with uncontrollable tears running down my face and a lump in my throat so large I couldn’t swallow, let alone speak. When the cardiologist finished the scan and told us that Sam’s heart looked normal to him I could hardly believe that we could leave the hospital and never return. I couldn’t get out fast enough.

After all the drama of tests was over I worried about telling everyone about Sam. The gifts, cards and flowers flooded into our house and each time we received a card rejoicing that we’d been delivered safely of a gorgeous bouncing baby boy there was the bittersweet feeling that yes, we had, but it wasn’t quite like that. I feared people’s pity and I didn’t know if I could talk to people on the phone and maintain control of my voice.

In the end I wrote and emailed everybody and they were wonderful. They were shocked, as we were, but they didn’t pity me to my face. They didn’t make out that an extra chromosome was the biggest thing about Sam. They still wanted to know about all the details of his birth and what his weight was, what his hair was like and all the other things that people want to know when there is a new baby. By their unconditional acceptance of Sam as a baby first and foremost I was able to put things into perspective; to see that despite being made to feel as if I had a freak in hospital, all babies are different and that the range of their difference is unimaginable before they are born and amazingly obvious straight away afterwards.

Although I think I already knew it, Sam has shown me that there is no such thing as a normal child. It’s a term I don’t use any more. I prefer the word ordinary. I have changed the way I refer to Down’s Syndrome too. Sam is not a Down’s baby – he’s a baby (first) with Down’s (a long way down the list of things that he is – shouty, cutey, hungry, bananery, smiley, wavey and clappy being far more important!).

Of course, my experience as the mother of a baby with learning difficulties is different to those mothers of ordinary babies. I have a lot more visits to hospital to endure (there is an increased risk of a vast array of medical problem associated with Down’s, few of which seem to affecting Sam so far, thank goodness), and a lot more health and education professionals to see. Most of them have been great, but just occasionally I do come across someone with an old fashioned attitude. Amongst these people it seems that having a baby with Down’s Syndrome gives them a license to patronise. I have lost count of the number of times people have “consoled” me by telling me that Down’s people are “so loving”, “will always be with me” (heaven forbid!), and “special” in that they make us aware of other dimensions to our lives and make us look at things in a different way.

One of the most difficult things to handle is the expectation that I am not allowed to dream for my child’s future; that unlike every other ordinary child, his future is not an open book, his character is set before he’s even a year old. How intolerable is that?! I am discovering my child just like everyone else. My child’s future is not set in stone. Sam is just one more completely unique human being, a living demonstration of the vast range of human experience, if you like.

Having Sam has certainly made me look again at the expectations I unknowingly and unthinkingly had of any child of mine. It has taught me that wanting my child to be anything other than confident, independent, true to himself and reasonably happy (let’s be realistic!) isn’t fair. It has taught me that when you embark on the adventure of parenthood there are no guarantees.

I think that these days we are led to believe that our children come with a “checked for intelligence and social acceptability” label, but none of us know what lies around the corner. After all, I didn’t have a baby so that I would love him only on condition that he would have the right number of chromosomes, or not fall out of a tree, or not cause me any nights of worry by staying out late at night, or of not making the choices I think he should make. I have learned that my child, and the children I hope to have in the future, owe me nothing. It is I who owe them everything.

I wrote this when Sam was a year old. He is now nearly thirteen and there is an awful lot more water under the bridge – much of which will follow in this blog. Enjoy.

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6 thoughts on “I never thought it would be me”

What a great story. I know I felt similar emotions when the hospital told me Ivy may have Down syndrome and I thought they had got it all wrong until we got her results at 5 days old. I plan to enjoy your blog x

My son is grown up but was born with a right- sided weakness. I had to battle for a diagnosis of something I had never heard of; muscles over develop on one side of the body making it stiff. He spent months in plaster and had to have intensive physio. I, too, remember being shocked when a nurse at the clinic said not to worry “children like this tend to have lovely natures”. Fortunately he has learned to live with this and his stiffness is negligible; it has not stopped him doing anything he wants to do. Oh and by the way he has got a lovely nature!